Community leader shares her story to highlight importance of organ donation

Katie Doke Sawatzky | May 26, 2017

Monica Goulet at the recent unveiling of a monument in Saskatoon for missing and murdered Indigenous women. She has been on the waitlist for a kidney since 2015.

When Monica Goulet
heard about the upcoming organ-donor awareness walk happening in Saskatoon, she
phoned up the organizers and asked if she could speak.

The 60-year-old lives
in Saskatoon and is from Cumberland House. She’s been on the waitlist for a
kidney since 2015. Her journey up to that point has been a long one, and she
wants to share that experience with others at the walk, which will celebrate
the Canadian Transplant Association’s 30th anniversary.

As a child, Goulet was
chronically sick with kidney and bladder infections. Not until she was in her
twenties did she find out from a specialist that she was born with a genetic
defect in her right ureter, which shot toxins back into her right kidney and,
over time, made it almost useless. She said the specialist had an X-ray of her
when she was 13 that showed the defect. Nobody had told her.

“Indian Affairs would typically fly into northern communities and do
X-rays en masse of all the people in the community at the school, and then I
guess they were expected to follow up,” said Goulet. “Nobody followed up with
me, nobody alerted my family, nobody told my doctor.”

Goulet had her right
kidney removed when she was 26.

“If somebody would have
alerted my family at that time, I probably could have had an operation to
correct the problem and I wouldn’t be in this situation today,” she said.

The next 30 years
of life felt pretty normal for Goulet. But in 2011, on a holiday in Mexico, she
became seriously ill. Her kidney’s viability went from 60 per cent to 20 per
cent overnight. Right now, it’s at 5 per cent.

“I struggled along as
best I could, accepting the information, being very distraught for a while but
then finally realizing this is something I need to live with and adjust to,”
she said.

Goulet has had to leave
her job as Aboriginal Relations Consultant with the Saskatoon Police because
she needs a lot of rest. Last year she started peritoneal dialysis, a procedure
that does the job her kidneys would do by exchanging liquids through a tube that’s
inserted into her abdomen. Goulet does this four times a day.

According to the
federal government, over 4,500 people were waiting for organ transplants in
2014 and 77 per cent of those were for kidneys.

Goulet says, according
to her doctor, that one of the highest needs for organ donors lies within the
Aboriginal community. This is because diabetes, a disease affecting 20 per cent
of Aboriginal people in Canada, is one of the leading causes of kidney disease.

While Goulet has the
support she needs from her family and medical team at St. Paul’s Hospital, she
knows that others like her aren’t as lucky. That’s why she’s speaking on
Saturday to raise awareness.

“You know there’s lots
of people in our community that struggle,” she said. “There’s a lot of people
who are on the waitlist for an organ donation, and there’s a lot of people that
need some support and some assistance.”

Sherry Duncan Paterson,
who is a volunteer for CTA and chairperson of the walk, received a double lung
transplant 25 years ago. She hopes the event encourages those still waiting for
donors and challenges the public to not only consider donating but clear it
with their families first.

“If people have spoken
to their families beforehand it can be kind of a no brainer,” said Paterson.
“We just want people to be more aware that there’s a lot of people waiting for
transplants.”

The walk takes place
on Saturday, May 27, from 1 p.m. to 3 p.m at the Saskatoon Farmers’ Market.